Now that CFSAC's over, what should we do?

We've had several CFSAC threads going so I thought it would be good to start one to discuss what happened and maybe what patients should do in response.

I'm a Brit and don't understand the structure of the US health research/care/funding system but CFSAC is the only regularly occurring ME/CFS meeting of govt/national-level officials I've noticed.

A whole load of issues and frustrations came up, one or two things got done (CDC's representative took back with him a request that the CBT/GET-promoting toolkit be taken off their website immediately, if I understood correctly).

I know a lot of people think poorly of what CFSAC has been able to achieve. Is there any discussion we can have that can lead to some actions for better outcomes?

The one thing that struck me they seemed paralyzed as to how to go forward. Perhaps future testimony from advocates and patients could consider more patient/advocate recommendations on how to go forward. The patient testimony is often effective but if nothing comes from it it doesn't do any good.

I was also struck by the lack of organization. Should the chair be the one making the call to people giving testimony? It would seem that could be done by someone else and the next person could be put on hold. That might save 10-15 minutes. One lady seemed to make a big deal of 2 sets of documents being made for committee members. Give me a break!

I'd like to see a lot more discussion and debate than what occurs. It started to get somewhat interesting with Mary Ann Fletcher at times.

Committee members should be ashamed of themselves leaving before 5:00. That's ridiculous in my opinion. The meeting was supposed to last until 5:00 and they had to round people up to have a quorum. Disappointing.

Too much fluff, not enough thoughtful debate and action. Finally, many don't seem comfortable with the process. That should be rectified before the meeting not constantly throughout the 2 days.

Maybe if this thread is productive we can summarize thoughts and draft a letter to committee members?

Maybe if this thread is productive we can summarize thoughts and draft a letter to committee members?

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Those are all great points, floydguy, and that's a good aim for this thread.

Maybe someone could do a quick description of what that committee is actually empowered to do? If all it can do is advise, is there another kind of committee that we should be pressing for, or is this what all disease groups are stuck with?

The patient testimony is an interesting issue on its own, I think. An hour and three quarters was assigned to that and I wondered whether the balance was right, given that while the panel are listening to testimony, they're not discussing how to help us. Some of the testimony about personal experience with the disease was extremely powerful (the lady who needs the saline to stay conscious, for instance - that made me cry). I think that's necessary. There was some great testimony (for example, from Dr Grobstein) about what CFSAC should be doing. That's also necessary. But is there a way to make the testimony more effective in terms of getting the committee to be more effective?

I wonder if patients/supporters giving testimony could coordinate so that there's a unified message - personal testimony from some people describing their suffering, advocacy testimony from others listing the same few, carefully selected priorities that we want from the committee. Maybe that's not practical; I don't know how the testimony people are selected (lottery?).

The CFSAC are getting a general kicking on many issues and I had the impression they are keen to help, though with somewhat tied hands - maybe we can help by focusing on certain issues in testimony and getting them to focus on those issues as a result.

I was struck by how the CDC representative seemed unaware that people would be unhappy that the CDC toolkit, which promotes CBT/GET, had been sent to 17,000 doctors. When people pointed out that the toolkit was positively harmful, he seemed to have trouble taking on board that it wasn't just an issue of tone or language, but content. In the end, he was happy to take back a recommendation that the toolkit be removed from the website immediately.

I don't know if that was his first time on CFSAC but he seemed to me like a man who hadn't been briefed at all by his own organisation. If he had, he would surely have known what patients thought of the toolkit.

People are saying that the high turnover on the committee because of the limited period that people can be on it means that there's a constant stream of people who turn up at CFSAC not knowing anything. Is there anything that we could prepare to brief particular CFSAC new members on the issues? For example, if a new CDC rep is going to be at the meeting, should we be asking one of our advocacy groups (like PR) to present them with an overview of the status quo and any concerns that patients and others have about their organisation's activities?

Could it recommend that the CDC (would that be the correct organisation?) issue a public apology for the govt's mistreatment of ME patients all these years, a la Norwegian govt, and issue a press release to the effect that it has done that, and why? I.e. bypass these people it's advising and go straight to the press?

I like the idea but I think that it will require some kind of breakthrough like from Lipkin or the Rituximab trials to force the issue. But if something like that occurs we should be prepared to rally like crazy and get whatever we can when it happens.

Hi floydguy - I guess the question is, is Rituximab already enough of a breakthrough or did the Norwegian govt jump the gun? Don't know.

Still thinking aloud, if CFSAC can issue press releases, can it issue one complaining about the fact that its advice is endlessly ignored while patients are sick and dying? Can they make a big thing about President Obama's promise to look into ME? Other govt organisations might treat CFSAC as though it doesn't matter but would the press?

I think there will have to be a research breakthrough/confirmation here in the USA personally - not invented here problem. Personally, I think that if they can make some progress on establishing the ICC or some variation as the recommended criteria that will be some progress. That would tighten the criteria up and maybe get rid of the name. And if the CDC takes down their ridiculous website on CFS that is a pretty good start. If we can limit the negative stuff coming out of the government maybe the positive stuff could be accomplished by guiding or trying to be helpful to the more private efforts such as CFI, Montoya, Enlander, etc. The government is making it pretty clear that they aren't going to take on any efforts to break new ground. The only way I see that changing is through an unquestionable breakthrough or through some media event that shames Congress/government into action.

I wonder if patients/supporters giving testimony could coordinate so that there's a unified message - personal testimony from some people describing their suffering, advocacy testimony from others listing the same few, carefully selected priorities that we want from the committee. Maybe that's not practical; I don't know how the testimony people are selected (lottery?).

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We've been trying to do this to some extent. This round, many of us repeated the main message of the joint letter of concern. It's a challenge because we don't find out until a couple days before the meeting who will be giving comment. And written comments are due BEFORE people know they were going to speak. In terms of how people are selected, that process is a complete mystery.

People are saying that the high turnover on the committee because of the limited period that people can be on it means that there's a constant stream of people who turn up at CFSAC not knowing anything. Is there anything that we could prepare to brief particular CFSAC new members on the issues?

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Voting members are appointed for four years, and they try to have terms overlap so there is not huge turnover at one time. Four new members (out of 11) joined this time. Turnover of the ex officios from the agencies is up to those agencies. In terms of briefing new members, I think this is critical. I was tremendously disappointed at the lack of knowledge displayed by some of the voting members - although I don't fault them for asking questions. It seems like it's the committee's job to ensure that new members are adequately briefed. I don't know if there are any federal regulations about the public discussing CFSAC business with individual members.

Still thinking aloud, if CFSAC can issue press releases

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As far as I know, they cannot. Or at least, they have not done so in the past.

Floydguy- I completely agree that CFSAC leaving before 5:00 is a disgrace! How can the gov (or anyone else) take them seriously?

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That's the fundamental problem, imo. The fact is, the government doesn't take them seriously. No one there was in a position to make any decisions or commitments. It's all fluff. The CDC guy has a message to take back to the CDC, but I doubt it's news to them that patients don't like the Toolkit. The fact that the CFSAC recommends they take it down means nothing. There's no teeth there, no authority. The CDC will do whatever it bloody well pleases with little, if any, regard for what the CFSAC suggests politely that they do.

The best that the people on the CFSAC can do is inform their higher-ups what the state of ME/CFS is in the medical/government world. If they're sufficiently dedicated and concerned, the individuals may be able to influence their superiors. There was a huge lack of awareness of fundamental issues with ME/CFS -- like the fact that there are only a couple dozen doctors in the whole country that even have a clue about how to treat ME/CFS, much less enough to create this buy-in they're so fond of.

It seems to me that the best the committee could do for us is to bring the message to their home offices of the truly pathetic state of ME/CFS medicine. After the patient testimonies, they seemed genuinely sympathetic of the hardship this illness can cause, but they still seemed to think that ME/CFS can be managed by a Primary Care Physician. Hello?

We have next to no doctors. We have essentially no research funds. We have no adequate case definition. We have no standard treatment plan. We have trouble getting disability. We can't routinely get the medications that can improve quality of life. We can't get insurance to pay for a lot of the treatments that can help because of {see above}. And so on....

I think the committee finally gets that we are really very ill. I don't think they get that we are really very ill in a vacuum of basic medical services.

Before the committee can do anything substantial for us, all the committee members need to be taught what exactly is the state of medicine with regard to ME/CFS. If we can do that, the committee might be able to help us some time in the future.

The patient testimony is an interesting issue on its own, I think. An hour and three quarters was assigned to that and I wondered whether the balance was right, given that while the panel are listening to testimony, they're not discussing how to help us. Some of the testimony about personal experience with the disease was extremely powerful (the lady who needs the saline to stay conscious, for instance - that made me cry). I think that's necessary. There was some great testimony (for example, from Dr Grobstein) about what CFSAC should be doing. That's also necessary. But is there a way to make the testimony more effective in terms of getting the committee to be more effective?

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(Those are my bolds)

Sasha, that is a very salient point. The personal testimony is heartbreaking and nearly tormenting to listen to. Many in the audience had tears in their eyes, although not so much the committee members. IMO, we've heard personal testimony twice a year, year after year, and it's possible to almost become immune to the agony. We are inundated with scores of the saddest situations one could ever imagine. And there is no end.

I'm going out on a limb here to say that instead of telling our stories, why can't the public take that time instead to question the committee members and especially the ex-officio members? Rhetorical questions as used in public testimony can make a point, but unfortunately they get no answers. Maybe if we, too, have a voice in holding the committee responsible for their promised actions, something just might budge a little.

In all my years as a research professional, I never saw a more poorly organized or managed meeting. As a former government researcher, what I saw was a bunch of lower-tier officials fulfilling an obligation. We have to do this, so send so-and-so, it will look good for her next performance appraisal to have been on a national advisory committee. We got a pat on the headfrom the bigger organizations, not a commitment to our cause.

Very sloppy pre-planning. Poor prep of committee members. Lack of awareness of issues and priorities.

In all my years as a research professional, I never saw a more poorly organized or managed meeting. As a former government researcher, what I saw was a bunch of lower-tier officials fulfilling an obligation. We have to do this, so send so-and-so, it will look good for her next performance appraisal to have been on a national advisory committee. We got a pat on the headfrom the bigger organizations, not a commitment to our cause.

Very sloppy pre-planning. Poor prep of committee members. Lack of awareness of issues and priorities.

CFSAC isn't serious about taking action. If it were, it would have circulated documents to its members prior to the meeting so that they could come prepared. It would also have scheduled its meeting for a time when its Chair was free of other commitments.

CFSAC isn't serious about receiving public input. If it were, it would have posted the meeting agenda prior to its deadline for written testimony as promised. Committee members apparently received the agenda two weeks in advance.

CFSAC sent us a message. We aren't worth the duplicating cost of the ME/CFS Primer for its members.

CFSAC isn't serious about taking action. If it were, it would have circulated documents to its members prior to the meeting so that they could come prepared. It would also have scheduled its meeting for a time when its Chair was free of other commitments.

CFSAC isn't serious about receiving public input. If it were, it would have posted the meeting agenda prior to its deadline for written testimony as promised. Committee members apparently received the agenda two weeks in advance.

CFSAC sent us a message. We aren't worth the duplicating cost of the ME/CFS Primer for its members.

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Exactly. What we've seen is 4 days a year of yackadda yackadda with no pre-planning, and no follow-up.

Oh, how I would love to chair that committee and see what could be done for us with even a reasonable amount of planning and follow-up.

I could only connect for the last ten minutes so may not have the best sense of the second day's meeting. But I was
struck as well by the fact that members were departing and leaving less than the needed quorum. Then the way
the very important recommendation was worded was also of concern to me. I was going to send a suggestion for
rewording as an individual but perhaps we could so this collectively.
My suggested rewording:
The DHHS and Department of Education work with CFSAC to educate ALL school personnel, students, parents and the wider community about ME/CFS.

I care very deeply about this committee and how if (dys)functions. I am planning some in-depth posts about various related issues.

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Thanks for that link, Jenny, and your thoughts - and thanks especially for your testimony at the meeting, which was superb. My hair would have been standing on end if I'd been one of those panel members hearing you. It was actually your testimony that made me think that if that's the situation, they need to be hearing that (and similar important points) unanimously from one testifying patient after another.

CFSAC isn't serious about taking action. If it were, it would have circulated documents to its members prior to the meeting so that they could come prepared. It would also have scheduled its meeting for a time when its Chair was free of other commitments.
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Did you catch the comment about how the government bureaucrat was concerned that docs would have to be duplicated if sent out in advance. In the past, members would forget to bring them so that they would have to be produced again. What is this the 1st grade? I am not sure which is worse: members not bringing the documents or the govt. being unwilling to have a backup set of documents for a handful of people

We've been trying to do this to some extent. This round, many of us repeated the main message of the joint letter of concern. It's a challenge because we don't find out until a couple days before the meeting who will be giving comment. And written comments are due BEFORE people know they were going to speak. In terms of how people are selected, that process is a complete mystery.

Voting members are appointed for four years, and they try to have terms overlap so there is not huge turnover at one time. Four new members (out of 11) joined this time. Turnover of the ex officios from the agencies is up to those agencies. In terms of briefing new members, I think this is critical. I was tremendously disappointed at the lack of knowledge displayed by some of the voting members - although I don't fault them for asking questions. It seems like it's the committee's job to ensure that new members are adequately briefed. I don't know if there are any federal regulations about the public discussing CFSAC business with individual members.

As far as I know, they cannot. Or at least, they have not done so in the past.

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Thanks for the testimony. I appreciate your effort to bring some urgency to the committee.